BC Becky

Never thought I'd want to be a breast cancer survivor

How do I be an ‘engaged patient’ in a hospital gown? #medx

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Becky

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Since my diagnosis with breast cancer, I’ve seen many different specialists (breast surgeon, medical oncologist, chemo dermatologist, plastic surgeon). My doctors appointments have gone something like this.

  1. Medical assistant takes my vitals
  2. Medical assistant directs me to remove clothing (usually waist up) and put on a gown (opening in front)
  3. I wait for the doctor. In the worst case, I waited over 2 hours .. but typically I wait about 10 minutes.
  4. Doctor comes in and talks to me (anywhere from 10 minutes to over an hour depending on the type of appointment)
  5. Doctor examines me (takes 1-5 minutes)
  6. Appointment ends and then I get dressed

I recall those first appointments. I remember feeling awkward talking to the doctor while I was undressed. I found it odd that the doctor would do the entire consulting/discussion (with appointments that were 30+ minutes involving a fair bit of question and answer) while I was undressed. I find myself wondering if this is an oncology thing or an American thing? I can tell you one thing, it isn’t a setup that encourages patient engagement. It wasn’t until a friend mentioned it, that I realized the power dynamic at play here. By being the patient, I’m already in a lower ‘power’ position in the healthcare system. By having me remove my clothes, that just increases the imbalance (or ensures the imbalance is maintained). It isn’t conducive to a collaborative dialogue, nor does it encourage me to be engaged.

Now, in Canada, I cannot talk about oncology, only primary care. In the primary care setting, the doctor first comes in and talks to me. If an exam is needed, the doctor steps out of the room while I undress and put on a gown. The doctor returns to do the examine and talks a little bit, then leaves while I get dressed. If further discussion is needed, it happens after I’m dressed. I never have those awkward moments where the doctor is explaining something to me and I’m sitting there in a hospital gown trying to ask questions and absorb all the new information I’m getting. It just doesn’t happen.

I have learned how the system works here (Stanford Women’s Cancer Center). I now bring with me a hoodie that zips up the front. After changing into the gown, I put my hoodie on. When the doctor comes in, I can ask all the questions I need to ask and feel comfortable sitting in the chair (not on the exam table). With my hoodie on overtop of my gown, I don’t feel like I’m undressed, and I don’t get cold. When it comes time for the exam, I can easily unzip and remove the hoodie. With my hoodie zipped up, I’m not sitting there half exposed while trying to have a conversation with my doctor. I feel a lot more empowered and a lot more comfortable.

I have learned how to work-around the system to ensure that I’m empowered – but I cannot help wonder why the system is the way that it is? I suppose there is an argument that it saves time, but really, given the back-and-forth and other things that are going on, especially in a teaching setting, I don’t think it actually makes a difference. Perhaps this is just a legacy practice from a time when the patient’s feelings were not considered, and with the push to have engaged patients, perhaps we need to start rethinking these processes with the patient in mind?

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3 responses to “How do I be an ‘engaged patient’ in a hospital gown? #medx”

  1. scottx5

    I honestly don’t think the engaged patient is more than simple compliance to the authority of the medical system. In Canada you generally get a smile, a recorded message that somehow is made to come out of the mouth a human-like person and a kind of imperious clucking when you seem out of sorts. My oncologist expects me to communicate only through my doctor. As a person I’m not welcome to participate and my “navigator” is only junior doctor speaking for the senior doctor.

    The “game” has been explained to me and my position is to be spectator to their indifference. In many ways I would prefer to treated by robots, it wouldn’t feel so impersonal and belittling nor would I feel bad for getting frustrated and upset. I’m just the vessel in which my cancer resides. It’s a repair system, nothing more.

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  2. scottx5

    Been thinking about how my experience actually differs from yours Rebecca and believe the disconnect for me involves communication across physical distance and how this scatters my care-givers and their decisions. There’s at last 10 people directly involved in my care and approaching them as I do as individuals with random requests tend to scatter their decisions when I really need them working together.

    Maybe it’s asking too much to expect individual responsiveness from a system designed by and for group consensus? In a way it seems the people I see as individuals are eyes and ears of a remote thing called a team and I shouldn’t expect more that their evidence gathering role like the way I understand the people drawing my blood for testing, as technicians only?

    Of course, in my case I’ve come away with a small scar and the removal of something I’m told was cancerous but have no conscious relationship with as you do with your breasts, image and identity. So I apologize if I’ve been cranky, unhelpful and too focused on myself.

    Dressing in hospital gowns is the norm here too. No dress-up for basic consultations or infusions as there’s nothing to inspect and my central line connections are on the end of hose long enough I think to do it at a drive through clinic:-) For CTs and day surgery things the gown is standard wear. Normally, we gown-up and wait in a large common waiting room which is embarrassing and disrespectful to some people–especially young people. This seems like poor design more than deliberate disrespect.

    And that might be the whole problem in patient engagement, design driven and only conscious of the needs of the institution. I bet it would be very different if nurses were involved and very, very different if patients had a say.

    My last hospital stay there was a guy who has an hospital flannel pajama and gown outfit that must have come from Ralph Lauren. Very swank and he even had a walking stick instead of crutches to push his IV tower along. I bet he had calling cards too so the doctors knew who they were dealing with:-) He stood out and your hoodie idea reminds me of his image as a person to be respected and not disguised as a hapless patient.

    Take Care Rebecca.

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  3. The relationship between oppression and empowerment? – Rebecca J. Hogue

    […] for example my blog post entitled How do I be an ‘engaged patient’ in a hospital gown? (September 27, 2014). In the post I describe the challenge as a patient when wearing a hospital […]

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